Carol's Cancer Blog

Just Hello

**Clarifier**--I wrote my story. It is long.  Like, I never write this much.  But, maybe it can help someone else here??

 

Hello everyone (who remembers me.)  

I think of you all daily, even the ''newbies'', who I don't know.  Part of me feels as though I should be here regularly, to support those new folks going  through treatment, but the other part of me cannot.  That is, I cannot be a regular presence of support.  I burned out some years ago. That said, I still send prayers up for ''everyone on Blog for a Cure'', on a regular basis.

  I have been controlled by my gut--side effects from cancer treatment if you will, for the past several years.  There are times I wanted to share it with you guys, but didn't, because I am cancer-free while others are in the battle; again. One of these days I will go into detail of my symptoms and the tests/treatment I have undergone in the past year, that helped me, finally, to not live in daily, minute-to-minute fear, of ''an accident.''  I ain't referring to #1, either.

  Fortunately, I have a GI doctor (at the VA no less, so anyone who hears bad things about the VA, please shelve it.  Not true.) Dr. Gavin, who has been wonderful.   Dr. Gavin, and another doctor there, a ''young" man earning his Fellowship in GI, said, after my last colonoscopy (and endo, 'cuase I have really bad reflux  and had GI bleeding last year), which showed strictures, said, ''let's help you.''  ...... TEARS welled up in my eyes!  I had read the report online, before my appt., and thought, 'anal strictures. WhatEVER..deal it it.''   I went to my appointment (follow up)only to tell them to, please removed the comment in previous notes that I was ''non-compliant with'' my Omeprazole.  Quite the contrary!  Without it, I am in agony (had it before CA.. IBS, etc.)  So, joy of joys to have doctors actually want to help me!  (another medical person at the VA, in GI, an NP, that I had had twice previously and was not going to go back because he is in idiot, umm, yeah.  I'm an LPN and smarter.  I think.  I didn't have to see him.  Hallelujah!)

  So, I guess I'll just tell my story.  A hyperactive gut. Regular stool accidents at work--like, monthly.  HORRIBLE!  I kept (and keep) loperamide with me at all times.  Sometimes, though, one "blip" of the gut, and I did not have time to get to a bathroom.  Often, I had no warning nor any SENSATION of having stooled--until I felt the moisture.  This, people, is no way to live. None. Zilch.  I have tried to watch "trigger" foods for years.  I just had no control.  Consequently, I had/have stopped participating in ANY group-type activities.  No long walks (hardly walking period, except for at work; which is a fair amount.)

  I averaged 4-6 stools a day. Some days, as many as ten.  Then, I would feel like I wasn't empty. So, strained, though wanting not to because that affects the bladder control...  Also, anal pain, from all of it.  THANK GOD for TUCKS! (and ibuprofen)

  Back to the past year 2018 to present:  Because I had a long history of IBS, reflux, Giardia (in 2003/2004), and the new dx of anal strictures, these docs wanted to help me.  Apparently, there is research out there (I might have looked up something, but no intense research because, again, after work, I don't open my computer at home. I am going to change that practice. I'd be much more productive) that correlates a hx of giardia with long-term gut troubles---I can't remember the exact facts (I need to read Helen's article on Chemo brain. Honestly, there must be something to it, the LT effects.)  So, last summer, went through a 'Lactulose breath test"-- which frightened me.  Lactulose is given to patients in the hospital, often, to make 'em poop.  One reason is to lower critical Ammonia levels in alcoholics who have Encephalopathy.  Because I was already susceptible to ''accidents'', and I drive 1.5 hours to the clinic, this terrified me.  However, when I arrived, the NP (a different one) assured me that the lactulose is diluted.  Anyway, in the test, you follow a special diet ahead of time, then go to the clinic/hospital.  Over a period of 2-3 hours (thereabouts), every 15 minutes or so, you drink a bit of the lactulose then... well, ya have to wait different intervals: 15, 20, 30, etc., time after ingestion.  It wasn't bad at all.  So, this test measures two different gases in the gut, checking for over-production (OH!  THAT is the tie to giardia!..FYI! )   

  The test results take several days.  One of the gases, in my case, measured moderately high to high.  The preferred method of treatment to regulate it is the antibiotic, RIFAXIMIN.  However, because that med has to have a special authorization, FLAGYL is given first.   I got sick with the Flagyl. Like, really sick. Even though I have taken it in the past w/o any problems.  So, a 10-day course, I paused for 2-3 days, then resumed, because I was desperate for a resolution to my life being controlled by POOP!  The Flagyl may have helped a little, but not much.  Fortunately, the Rifaximin tablets were authorized.  1 tablet 3x/day for 14 days.  I tell you what!  I felt better after that medication, than I had in a long time!  My BLOATING really has gone away.  Pretty much anyway.

  In addition, in trying to correct the anal strictures, which could contribute to my troubles, I was sent to a surgical center (outside of VA), who canceled my appointments THREE TIMES!  I forgive them now, because the NP I was supposed to see, I found out later, was pregnant (probably had some complications) and ended up going on maternity leave early, so I saw a physician.  Like, two months ago.  So, my initial referral was submitted in JULY 2018. Cancel, cancel, cancel... (then, they had the nerve to tell the VA that, ''She --moi--keeps cancelling.  We will agree to ONE MORE appt. slot.  That is it.''......Really?  I called the clinic and fixed that error. 

 I saw the surgeon in FEB 2019.  I liked her.  After getting some history from me and reading notes from my tests at the VA, her offer was to start with a temporary stimulator, which would go in my low back area.  If the temporary stimulator is tolerated, a permanent stimulator is surgically placed. The stimulator, originally,  was invented for people with urinary incontinence, but has shown to have some positive effects for those with GI problems, Crohn's, Colitis, IBS, as well.  Well, I have had multiple back and hip injuries over the years.  One REALLY BAD injury occurred in 2000. Injury to left hip, back (entire spine) up into my neck.  I already had a lot of problems with my neck from car accidents in the 1990's (hit a tree head-on driving home from noc shift. Two blocks from home)  Consequently, I have worked REALLY HARD to keep my NERVES at bay, since that accident.  It took my MANY, MANY years to get over really severe pain and always, feeling as though my sacral-lumbar area was ''plugged into a light socket.'' (mind you, I am proud to say I missed only one day of work after that accident, and it is because I could not move.  Literally.)  So, no, this stimulator to help me not poop on myself and to live in daily fear of such, was not an option for me.  HOWEVER, in the course of her interview with me, the doctor sort of mumbled, ''Maybe you should take lomotil/loperamide more often.''  .....!.....  WHAT?  I never thought of this because, as you anal cancer people know, controlling constipation and diarrhea is a fine art!  I took loperamide ONLY when scared to death loose BMs were imminent.  I was too afraid of the PAIN, if I became constipated.  Can't have that.  Passing out from pain is not an option. I still get regular anal pain, though not as frequently (like, constantly, as in the past. Still, often enough.)   

  Since that appointment, I take loperamide ONCE A WEEK.  Usually, two tablets, though I took only 1 tab, one week.  I think the two tabs is better, because a week ago or so, -- I was running to the bathroom a lot, at work.  Can't have that.  I feel, for the first time in eight years, that I am more in control of my body.  I don't feel  as though I want to cry all of the time, and go live in the wilderness so I won't get embarrassed; again.   I wrote to Dr. Gavin and let him know, and to thank he and the other doc, and their team.  He wrote back and said loperamide is a safe medication to take, long-term.  BONUS! ... I need to write to the surgeon and let her know.  My referral is still active.  I had told them to  not cancel it, at my appt., so I could ''think about it''--the stimulator.  I told Dr. Gavin, however, that I ''cannot fathom, with all I've dealt with in past, with my overly-active nerves, to volunatarily stimulate them.''  Nein!   Oh!  What a great feeling!  I am not perfect, but better. :).............If anyone is still reading.   Moral of story:  keep your doctor appointments, even if you are a nurse and can read the results online. ;0

xoxo,

Carol P.

  

 

Thomas sent you a prayer.
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Wow! You’ve been through a lot for sure.
Yeah, but I bounce back (though the bouncing has gotten OLD!😉)... And,as we know, I am blessed to be where I'm at; albeit whiny at times. 🙏💪😁
I was told about the stimulator also. I haven’t been healed enough to try it. But I didn’t think it sounded like a great idea to begin with! Thanks for the share. I get horrible pain in the sacral area. I don’t want to have more pain.
Carol likes this comment
I realize that my reply is SO very late. Nevertheless, Allseitz, I recommend, once you have healed enough, to keep Loperamide on hand and to take it 2-3× per month, to try it. I haven't yet read your profile, so don't know how far out you are?? Three months has passed since my blog, but healing after chemo rad takes quite a while (for BMs to not hurt like hell.) Tread cautiously. Give me some details on where you're at. Maybe I can help. Blessings and prayers!!
Carol P.
Allseitz likes this comment
My two year is coming up on September 13th.
I don't have pain but I sure have poop accidents
Lori,
Try Loperamide prophylactically! 1-2 tabs every week-- or, every-other-week I recommend weekly though, because the couple times I didn't recently, I paid for it!! Dammit!
Lori likes this comment
Hugs!!
Lori likes this comment
Hi Carol - Thanks for posting. Good to hear from you.
Carol likes this comment
JANA!!!!! My "cancer sister"!! I think of you often! How are you?? So good to hear from you too. (I'm "veclempt!"😍) BIG cyber HUG!!
Carol, after all you've been dealing with I'm so glad you have finally found the thing that is helping you! This is great news and I'm glad you shared it all. My bowels are all over the place. If I went to the doctor every time they act up, I would be there one week for diarrhea and the next week for constipation. I hope that you continue to have good results with the medication. Big hugs to you, my friend!
Carol likes this comment
Martha,
Yeppers!! "All over the place" sums it up.
I hope you don't think I went to the doctor frequently? No. More times thi past 16 months, to get those tests in, and follow up. I was so depressed all of the time and nervous!! Here, Martha, YOU have been one of my shining lights, with your zeal and running after cancer tx!! Thank you!! You have been a part of my list of folks who inspire me to keep trying. How is your mom by-the-way??
Hugs!!
Carol
Smurf likes this comment
Hi Carol! Awwwww, you are so very sweet! Thank you so much for your sweet comments! As for my mom, thank you for asking. She continues to go downhill regarding her memory, sleeps a lot of the time, and doesn't get around very well anymore, but she's still hanging in there.

Now, about you! I hope you are still doing well and the job is going well too. I have often thought about you, hoping that things are greatly improved. I'm telling you, this post-treatment stuff can be challenging! I was recently on a nearly 4000-mile road trip and my #1 concern was, yup, how my bowels would act. Fortunately, I had no problems, taking care to avoid trigger foods. I think we all learn as we go!

Take good care, my friend, and I wish you all the very best. Please check in once in awhile and let us know how you are. Hugs!
Hi Carol, I've thought about you and wondered how you were doing. I can so relate because I am having the same issues as you. I can't go two weeks without an accident. I've just been lucky 90% of the time they happen in the morning as I'm getting ready for work, but even that 10% of the time has been rough. It's happened when I'm walking, shopping, at work, etc. Like you, no warning, and then you realize it happened.
I hope things get better for you and thank you for the information on the stimulator. I'd never heard of that.
Carol likes this comment
Mari,
I think about you too. I read updates I get, but am bad about logging in.
Mari, try taking Loperamide once a week whether you feel you need it or not. Before that surgeon mumbled it, during my appointment (because I was averaging 5-6 bms a day, ALL shapes, sizes, and volumes (TMI... I know!!) My fear of pain if I got constipated, since my inital surgery (for the anal fissure) , then the whole cancer thing.... Yeah. Never considered taking it except for acute emergencies. It has made a difference--except if I think I can "skate", miss a week...BAD accident 4 days ago, AT WORK!!
Also, Mari, if you don't have a lot of low back/back/hip/sacral pain,especially, hyperactive nerve activity back there, you can look into the stimulator. I will try to find the exact procedure and post it for you.. Try loperamide first though, chickadee. Hugs!
Good to hear from you. ❤🙏
Carol
So glad u posted. Although we survived treatment, living with long term effects is very tough. We are all at different stages of healing so your post is very helpful to me knowing what to expect long term can make all the difference in my journey. U have been through so much so I am happy u have some relief.
Carol likes this comment
Inshock,
Haha!! What an appropriate User name!!
Thank you. Yes,everyone's experiences certainly can be helpful!! Trial and error , good friends who have gone through what you are going through, and good doctors, who actually give a shit about your quality of life!! (Sorry for cussing, but some medical Providers aggravate me and ...VEX me!)
Keep the faith, take one day, one MOMENT, at a time, and you will persevere.
Hugs & prayers, and thank you for your comment.🙏💪🌈
Happy birthday week!
Carol likes this comment
Thank you, Lori!!
Happy birthday Carol!
Carol likes this comment
Thank you, Lucky!!
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What the Heck...

#1--Let me preface this note with this:  I AM very grateful for being alive. Being able to work, talk, take care of myself.  Yes, I have many body things going on at once. Nevertheless, I feel (relatively) very lucky.

  So, I suppose I should look at my last post.  On 26 March 18 (sorry, I work military again...) I passed 6-7 large, bloody-looking (burgundy) stools.  ''Large'' as in amount.  Always ribbony.. always and forever; except once-in-a great-while.  The toilet water turned burgundy/wine colored (for nurses here, it looked like urine after a TURP--in the old days anyway.)  A bit the following day and a couple days after that.  None as much as that first day.

  Freaked me out. On the other hand, I was trying to dissect what might cause this color??  I did buy fresh beets and eat a few slices. Like, TWO.  Would THAT do it?  Only two slices???!   I did have pain as well . . .I have also been having a lot of liquidy ''stuff'' over the past several months... That freaks me out because I had mucous prior to Dx.  this isn't mucous per se', still.  I HAVE been experiencing a LOT of hyperactivity in the bowel. A LOT, the past few months.  Been wondering what that is about. Makes me nervous 'cause you know that my ENTIRE F------g life revolves around NOT having a BM mess!

   Anyway, went to VA ER per RN's request, to check CBC and anything else they might do. (he was hoping for a CT to r/o Colitis-which I didn't think it was because I didn't have cramping pain. Just butt pain. Anyhoo... CBC was low normal. On the cusp. Good. . . lower than it has been in a few years, but, okay. Doc did an anoscope (which GI hadn't done for a couple of years. Last visit was 2016, I think.)  That looked 'okay.''  Made appt. with GI Clinic which is tomorrow, Wednesday.  . . .

  So, my fear is: 1)  Nawww... not return of cancer. Perhaps an ulcer.  2) What if the color was from the damn BEETS???  How very embarrassing that would be!  But, I've eaten them in the past without turning toilet water red!   Oh, BTW, I ate another couple slices--I can tolerate beets only so much--last Saturday. Kinda/sorta experimenting. Two slices (large beet) max.   Sunday, I had two bloody stools.   . . Today--or yesterday, I had a bit of red in stool.  No beets since last weekend... 

  So, anyone care to chime in??

DeAnna threw a punch at your cancer.
4 people sent you a hug.
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Haven't ever had that kind of bloody stool other than when my ass was falling apart during treatment.

If your doc didn't find any in the lower part of your bowel then it seems likely to be from higher up. Could it be an ulcer or diverticulitis type thing? If it was peritonitis it seems like your blood work would have had a lot of white blood cells and you'd be having some other serious side effects.

Hope they find out what it is at the GI clinic. Certainly doesn't sound like something I'd want to just wait and hope it goes away. Will think good thoughts for you.
Thomas, Carol like this comment
Hi Carol , I think the anascope is really good news....I would put my focus on other options. Don’t even think about the c word. Food plays a big role in my life now and my BM’s...coffee can really agitate me for example. I’ve had beets and for me they can change the color of my stool as do a significant amount of carrots when I drink raw juices. I wish I had more ideas or suggestions, just wanted you to know you’re not alone. Thinking good thoughts for you and that this gets resolved soon 🤗.
Carol likes this comment
It could be something you are eating that is not agreeing with your system. It is good that you are going to be seeing the GI doctor. Big hugs for good news.
Carol likes this comment
Years and years ago, I had burgundy stripes in my bm. No blood in the stool water. I had a colonoscopy and they found a large polyp...which wasn't cancerous. However, it was large enough they apologized for how long the surgery took.

I could feel pain as stool passed by that area. From what I read, there wasn't supposed to be cramping pain because in that area, one can't feel pain.

I hadn't been diagnosed with anal cancer yet...that came 20 years later.


Strange you should post today. I have been having firm stools (unusual for me) and had a tinge of blood in the stool today.

Good Luck. Keep us posted.
DeAnne,
One year later.... How are you doing???
I’ve noticed that beets do that, and if you look online you’ll see many accounts of it. So maybe don’t worry too much, and just stay in touch with your docs.
Hi Carol - how scary! I have also been having mucous visitors lately. I attribute mine to stress. The other day I had bright red blood with my painful BM. I would have freaked out (and kind of did) but I had just seen my CR doc less than 3 weeks prior for DRE and anascope which he said NED, but saw a small hemorrhoid. I never have had hemorrhoid before only falsely diagnosed with one (my anal cancer tumor) for 2 years! It is so frightening and yet we are almost 7 years out! I don't think it is a reoccurrence, but keep pursuing. I love beets and drink enough red wine that I never worry about reddish pooh :) Keep us posted. Love ya!
That is a mystery, indeed. Like Rick stated, I am wondering if this is something from higher up in your GI tract. I hate to suggest the C-word--no, NOT cancer--colonoscopy. Sometimes you just have to go further up for answers. I would definitely lay off the beets for awhile and see what happens. Let us know what the GI doc says today. I hope all is well.
Cleo likes this comment
Like you, my life revolves around avoiding accidents, especially in public places. The other day I thought I'd had one and found I had passed a big ol' blood clot. Had some bleeding on and off that month, which I optimistically will attribute to having had the flu and taking too much Advil. I think our systems are royally screwed up, but I think Martha is right...time for a colonoscopy for you.
If you stop the beets and it stops just sayiin leave the beets to Gloria Estefan
Hi Carol. Just wondering how the GI visit went and if you got any answers? I hope things are getting better.
Carol, any update? I am just catching up after a trip and hope that you have some answers! My own experience is that you get better...and better..but you are never entirely free of that "weird event." During this trip I was coming out the door of the hotel and suddenly realized that I had not just passed gas...back to the room to change clothes..No reason whatsoever for this "attack."

Hope you have some answers from the GI Clinic...
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Vital Info

Posts

February 24, 2011

Sierra Vista, Arizona

July 20, 1962

Cancer Info

Anal Cancer

squamous cell carcinoma of the anus

February 23, 2011

Stage 2

2.1 - 3.0 cm

Negative

Negative

No

No

Difficulty going to the bathroom; telling my kids. Worrying about how to pay for tx. Seeing all the young people here. Chronic stool incontinence..which keeps me from participating in certain exercises and, definately, avoiding group outings.

REALLY be a support for others/fight for my kids

Prayer, listen, feedback.

Orange Juice! (I craved it); steak; homemade vanilla pudding.

Patience, an ear, chocolate . . .

Western Washington Oncology 2011-2012. Switched to VA in 2013, to save $$.

If you have a choice, get a port. Exercise through treatment, if possible. It helps.

Take every day head on. Prayer, whatever, too.

May 19, 2011

October, 2011

No, as of 09/24/2017. However, a sigmoid polyp--1st one, was discovered and removed 06/2015.

Chronological order: Blood-tinged drainage for months, then heavy bleeding with BMs-which I "hoped", for months, would go away. A hard skin tag, change in stool appearance, increased difficulty defecating. PAIN!

I give to various charities: St. Jude's Children's Hospital and Ronald McDonald house,cancer charities; multiple fund-raisers. I am too tired and lazy to organize a fund-raiser. Mostly, my emotions are shot. Gone. Just...gone.

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